How I Do It

As a working Mother of 3 children, two of which have disabilities, people often say, "I don't know how you do it."   My response was always, "I have no idea either, but I do."  Deep down I knew that if I didn't "do it" nobody else would, and when you do not have any other options - a Mom has to do what a Mom has to do.

Part of me thinks I have strategically bitten off more than I can chew career-wise, because if I actually did have down time I would probably just spend it in bed feeling bad for myself.  I keep busy because I have to.  I am a scheduling queen.  Between 3 jobs and 3 kids (4 if you count my husband), my day is packed.  There is no wiggle room or room for error.  And that keeps me sane.

If you are a parent of a child with a disability, you probably hear about self-care all the time.  Well meaning friends and relatives say things like  "I hope you are doing something for you." with a pitying look in their eye. Although sometimes I feel guilty when people tell me to "take care of myself".  I feel this way because when I think of self-care, I think of physical things.  I feel bad because I am not running, or eating better.  But then I refuse to allow myself  to have negative feelings over an idea that is supposed to make me feel good!  I do practice self-care.  When I can afford it, I get my nails done.  I even go to the salon to cover my every greying hair with a nice shade of blonde. 

I recently signed up for Paint Nite as a fundraiser for my sons school.  I have wanted to do one of these events for the past few years, and was very excited when the opportunity arose.  It looked fun, and creative - right up my alley.  I was lucky enough to be able to experience this night with some of the best people I know. 

The night started out great - drinks, and lots of laughs.  But within 45 minutes of arriving, I realized something.  I don't have fun anymore.  I can't seem to will myself to have fun.  It was nice to be out - but as I sat around listening to everyone laugh, drink wine, and tell funny stories - I felt nothing.  This was supposed to be one of those self-care activities, and it didn't feel fun at all.  In fact it made me feel worse because I couldn't participate like everyone else was.  I just wanted to go home.

It dawned on me that I can juggle everything in my life - but the price of being able to do so is steep.  I am not capable of allowing myself to have fun anymore.  Sure, I can achieve spurts of fun here and there.  I can laugh at a good joke, and have a nice lunch or coffee with my friends, but I am not fun.  This realization struck me because I used to be really fun.  I was the first one to arrive, and last one to leave.  Sadly, that is not me anymore.

The idea stuck with me for a few days, and I thought about it a lot.  I tried to analyze the night, and come up with excuses or reasons why I felt the way I did.  But it all made me fell pretty crappy. 

In the end, I decided I am okay sacrificing my fun-ness for my kids.  If being a bore is the way I keep them happy and healthy - it's fine with me.  Motherhood is about giving your all to your children, and my all just happens to be my fun side - and that is okay with me.

A Break from the Norm

This blog is all about my daughter Jessica, but today I wanted to post about my oldest daughter Amanda.  Enjoy!

Poster Child

For the past decade I have been under the impression that there is such thing as a “perfect” special needs child. You know that perfectly cute, exceedingly happy child that lights up the room when they enter – the “poster child” for their disability? My child most certainly is NOT that child.

Over the years I would meet the parents of these poster children and I would be flooded with emotion – jealousy, sadness and mostly embarrassment. My embarrassment surrounding my imperfectly disabled child stayed with me for a while. I was uncomfortable when others met her; unsure what would come out of her mouth. I was ashamed to bring her to the neurosurgeon, knowing that she would draw on the little models of brains and be disrespectful of him. I felt like I was less of a mother because my child  would never be asked to have her picture plastered on a Children’s Hospital elevator. My daughter was NOT that child.

As if dealing with an imperfectly imperfect child with a whole host of medical issues (hydrocephalus, cerebral palsy, vision issues, seizures, etc.) wasn’t enough my daughter also suffers from mental illness.  For those of you who have not experienced mental illness, it is not pretty.  It is unpredictable, hard to manage, and sometimes ugly.  It can make others not want to be around your child.  It can elicit rude remarks from strangers and family members alike.  Mental illness is not fun. I have worked very hard in my community and my career to rid people of the stigma that surrounds mental illness.  I talk about my daughter’s mental illness freely, in hopes that it will allow other parents feel less burdened by their children’s mental illness.  Even with all this openness, my daughters imperfect imperfectness bothered me.

Recently, I had a revelation: my daughter’s imperfections are what make her who she is, and I’m okay with that. I am okay with my daughter not being the poster child for Hydrocephalus or Depression.  I am okay that doctors don’t immediately think of her when they want to speak about a case.  I am even okay that occasionally other special needs parents feel bad for me because not only does my kid have medical issues – she is also depressed, and moody, and anxious!.

 

Although life can sometimes be extremely difficult, I don’t feel bad for myself.   I am content that my child is different - even in the world of special needs.  I am resilient. She is resilient. I don’t need a poster child.  I am content with my child being who she is.

 

It is difficult for parents of special needs children to live in a world where their children are constantly compared to typical children.  Why do we have to make ourselves feel even worse by comparing our child to other special needs children?  The answer is easy, we don’t.  Love your children for who they are. Relish the differences they have to the typical and special needs world alike. Is this easy? Heck no! Do the best you can, because seriously – do you need one more thing to worry about?  I know I don’t!